Work in Progress

I remember where I was and what I was doing the first time I felt pain in my lower back. It was in Kansas City in 1995. We lived in a house on Barry Road in Kansas City North that has since been torn down when they built Zona Rosa. I was in the kitchen of this house and standing at the sink rinsing something, I assume to put into the dishwasher. I tried to ignore it and thought it was a passing problem and that I must have slept wrong or something. As I continued to stand there at the sink, I realized that this was quite a lot of pain to be experiencing for doing nothing more exotic that rinsing dishes. I didn’t really think it meant anything, but that was the beginning of a medical odyssey that has still not ended for me. I went from a normal, healthy woman to an almost housebound woman who could not move without my pain meds. I am still not cured, but my life had deteriorated to the point where I didn’t think that I could take much more. I found help finally, but it was pure happenstance that I found the doctor who helped me so that I could live a somewhat normal life.

I am glad that I didn’t know then what I was in for, or I probably would have panicked. Besides the pain itself, a chronic pain patient enters a world of prescriptions, injections, physical therapy, muscle relaxants, TENS machines, biofeedback, massage, hot pads, cold pads, surgery, psychological examinations, and extremely damaging, accusatory medical people who accuse patients who are only seeking relief of their pain of being drug-seeking addicts. You face dismissal by some doctors if you show up one day early for a prescription. You have to count days between prescriptions, numbers of pills, trips to the doctor’s office for prescriptions that can’t be called in to the pharmacy and the inevitable 30 to 45 minute wait for some of the pharmacies to fill your prescription. Just the logistics of being a chronic pain patient can be exhausting and disheartening, not to mention very expensive. In my own case, I also have the kind of skin that will not allow patches to stick to my skin for the three days that they are supposed to. I had to buy expensive products like Tegaderm to keep the darn things on for three days that they were supposed to last. At my last check a package of five 4 inch by 4 inch Tegaderm patches was $16.000. Each Fentanyl patch lasted for 3 days times 5 patches of Tegaderm to hold them on to my skin adds up to about $32.00 a month – just for the supplies.

Retail price for the Fentanyl patch (called Duragesic), at last check, was $700.00 for a month’s supply. The generic patch was $425.00. I am thankful that my insurance covered most of those costs – but what about people who need this and don’t have or have inadequate insurance? There are many people in this country needlessly suffering with chronic pain who do not have access to this drug. I am thankful for that, but I certainly wonder what becomes of people like me who don’t have the coverage. Only a millionaire could afford to pay for it all on their own.

I have no idea what the cost is now, but I would guess it’s over $1,000. And chronic pain patients generally have to take more than one drug. I have always been fortunate enough to have insurance and prescription coverage for all but one month of those 16 years and counting.

Diane,

I would love to see your bibliography. I have just finished a book about the history of pain and some of the writer’s experiences. It is called “The Pain Chronicles.” I have a Kindle and I highlighted so many passages in this book, which meant so much to me. I have thought about sitting down and writing about my own experience, since it went on so long – 16 years. I was starting to have trouble even before I moved to Tulsa, and I was close to desperation when I got my pump. I think the writing could be cathartic for me. Feel free to use anything I send you in any way that will help you with your class. I am of the opinion that email is something that is at least semi-public and one should not write anything in it that you would not tell your mother! (Assuming that I had one, which I don’t. I lost mine to cancer years ago.)

I go back to the pain clinic at the hospital tomorrow for a refill. I have been told that I am a different person now and I think they are right! I told my doctor that I wrote my dissertation when I was taking 50 mg of methadone and a 100 mcg. fentanyl patch every three days. He looked at me and said “Wow, that’s amazing” while just shaking his head.

I think you are right to keep teaching as long as you want to and have to. You are right that teaching gives energy. I long to be back in the classroom, but simply have not found anything here. I miss it more than I can say, but there are hundreds of folks like me who can’t find even an adjunct class up here. I keep chugging on and looking. I know not working contributed to my depression when my pain was so bad.

I hope it is at least a little cooler in Tulsa, and that the storm was not near you.

I’m so glad the pump is working–a life without thinking all the time about hurting has got to be a great change.

I’m also glad to get a note from someone who writes so well about something so hard to convey. I’ve been doing some research into disability studies (specifically in the humanities, for a freshman seminar I plan to teach next spring) and your email connected immediately with all I’ve been finding–had no idea there was so much out there–a different perspective on literary studies, and a sometimes disheartening one, for sure. But then, you taught Frankenstein, didn’t you? If you’re interested, I’m compiling a working bib so I can remember what I’ve found and can send you the latest installment.

Didn’t teach this summer, just worked a little for Nimrod and not much there. It’s been very hot, as it has been everywhere, and my energy is pretty limited. Almost wish I could afford to retire, but teaching actually gives me energy and keeps me interested in things, so probably just as well I can’t.

Take care and stay cool.

Diane

________________________________________

From: Victoria Chance [vjchance@kc.rr.com]

Sent: Tuesday, July 26, 2011 3:23 PM

To: Burton, Diane

Subject: RE: Vickie’s News

Diane,

I think I did the same thing you did. I intended to answer this and then it kind of slipped my mind. The pump is GREAT. I cannot tell you how much it has made a difference in – most of all – my quality of life. I am getting around better than I did before I left Tulsa two years ago. I only have 1.5 mg of morphine per 24 hours that goes directly in my spine. That’s it. Part of that I get via a little machine that I operate that gives me a bolus of .05 mg if I need it, every four hours. I am down from a 100 mcg per hour Fentanyl patch and 50 mg of methadone (5 per day). That is what I had been taking for the previous five YEARS! I do have a Percocet prescription, but I don’t take much of it. Unless I have overdone it and start hurting and the bolus doesn’t get it. I also have the same muscle relaxant that I have used for years. Even logistically it is better. I don’t have to worry about taking the pills on time, changing the patch every three days, buying the Tegaderm to keep the darn patch on my skin since I have that kind of skin that won’t keep things like that stuck on my body (very expensive), and physically having to go to the doctor’s office once a month to get prescriptions. I still go about once a month because we are still working on the dosage a little bit, but after that is resolved they tell me I will only have to have a pump refill every three months. My costs are down considerably already. I really recommend that anybody who has chronic pain look into going to a real pain clinic that is associated with a hospital.

The drug pump is the last resort, unfortunately, but there are alternatives like a Neurostimulator. That is a kind of internal TENS machine that blocks pain signals with electrical charges that is implanted into the spinal canal. They could not get it into my spine correctly because I had too much scar tissue in there. The drug pump is only put in one place and the Neurostimulator goes several places in that space, as I understand it.

I also feel so much better, even though I never felt drugged or groggy on those drugs. It just gave me the wherewithal to do what I had to do. I even had a doctor tell me that “was my addiction” – feeling better. Can you imagine? I seem to have much more energy and I am sleeping much better. I have been reading a book called _The Pain Chronicles_ that I highly recommend. It is a history of pain and its treatment and some stories about folks dealing with chronic pain. I really do relate to it.

How is your health? Are you doing okay? How many classes are you teaching this summer? How is the world treating you?

How are you? How is the pump? It sounds like it might give some real relief. I talked to Sandy just a little while ago–I’d waited so long to respond that I was almost too embarrassed to write and wanted to know, if she knew, how you were doing; she said you’re looking for work, so it sounds like the pain is under control, which would be wonderful.

Many apologies for having taken so long to write–your email came at the end of the semester and I pretty much lost track of anything that wasn’t work.

Spring was a hard semester for me–mostly just fatigue and too many papers to grade–I hate summer for the heat but am finally starting to relax, just helping get the next issue of Nimrod ready for press. So nothing is new, which is ok by me.

Wanted to let you know that I am having some surgery on Monday. You know that I have been dealing with chronic pain for more than 15 years and have been taking some serious drugs for it. There is this pump,( which I only just learned about which has been in use for 15 years,) that is implanted in the abdomen, with a tube that goes from that to the spinal cord area. It sends the drug right where it needs to be, instead of having to go through the body’s digestive system. It uses a slight fraction of the amount of drug that I have been having to take. I am so excited about this, and I hope it will help me function a lot better. I have been practically housebound for a year, since I cannot walk very far. If it gives me back the ability to walk, I will be so darn happy, I can’t tell you. I need to be working full-time, but I haven’t really been up to it lately. I hope this gets me able to do that. Anyway. Think of me around noon on Monday, as that is when I go to surgery.

Thought you might like to know. I would love to hear about what is going on with any/all of you, too. It is COLD in Kansas City. We actually have the furnace on, and I don’t remember that happening EVER. It is normally about 75-80 degrees.

From a 5/2/2011 email to Darlene E.:

I wish I could have come, but I just wasn’t up to it. Next time, I hope. I hope this implant thing will help give me back my life! Or at least part of it. I took Jim to the airport before dawn this morning, so he could go back to Boston. He loves this traveling stuff. Great news from the Mideast, huh? Got that s.o.b. that planned 9/11.

From a 5/13/2011 email to Darlene Embry:

No lie! I am getting excited/scared. My surgery is Monday. I hope that I get everything I want out of this. I want to be able to walk and stand better than I am now! How are you all doing? Jim is coming home tonight. He’s been in St. Louis all week.

From a 5/19/2011 email to Darlene:

Apparently, I tried to crawl away from the doctor while I was on the operating table! I was out, but I remember having nightmares, being scared and trying to crawl through clouds or white sand or white cotton balls or something. I had no idea that I actually was doing it. They only gave me sedation, not the full tube down the throat deal and apparently I was a little more aware of things than they expected. I think I am going to blame it on the drugs! Ronnie thought it was pretty funny. I do too!

I am sure they have, but this doctor is very young, only 32. He knows me by sight and by first name when he passes me in the hall, since I was the first patient that he could not insert the Neurostimulator into even after an hour and a half of trying. And then this happens. I don’t think he’s ever gonna forget me, do you? He is the absolute nicest doctor I’ve ever met, and I hope he never loses that and becomes an SOB like a lot of them. All the nurses seemed to like him too, which is a HIGH recommendation.

From and email to HdeA on 5/25/2011

I also feel a good deal more like myself. I went to the doctor this morning and got a 10% increase in the medication in my pump. It was on the lowest setting, “a whisper” the nurse said. They also gave me this little doohickey thing that I can use every 4 hours if I need to give myself a little more medicine for my back from the pump. I also have a bit of Percocet. I am off the Fentanyl patches AND I AM OFF THE METHADONE, completely. Haven’t had either one of them since May 16. I am very, very happy about that, even though I had some withdrawal symptoms. The best news, I can take a shower now!

Assorted other emails to D. McAlexander and others:

DM on 5/14/2011

I did have surgery in 2002. It did very little for the pain. I’ve heard that some folks have had 7 or 8 surgeries with no relief, so I didn’t want to try again. It was a very difficult surgery and I didn’t want to put myself through that again. My internist at the time told me about having the patients who had multiple surgeries with no relief. I hope this works as well as I want it to.

DM and me exchange from 5/18/2011

He needs a neurosurgeon for his next surgery, if he chooses to go that route. If he has not seen one, I would recommend it strongly. Also a good, hospital associated pain clinic. I would also have him check the Medtronic.com site and find a doctor for this pain pump. He’s endured enough. I think this is going to work out, but it is too soon for me to tell. Just got back from the hospital yesterday morning and I am not supposed to do stuff, but I figured the computer was okay…

I didn’t know you had surgery before. Art has had 6 surgeries. He keeps getting scar tissue build up because he gets keloids (not sure how to spell). The scar tissue wrapped around his spine and they can’t get it and he eventually will be paralyzed. I don’t understand why they couldn’t use a laser to burn it off. Maybe if he was rich they could help him. He needs another surgery now. His left leg is really little because he lost all his muscle and his toes are curled up and he is wearing his shoes out on the top from his toes being curled up all the time.

I hope this works for you. It is such a drag not to feel good.

DM from 5/19/2011

Heard about the lovely weather you are having on the news this morning. Weird, huh? It has been a cold, wet spring here. We have had record lows. I am sore as heck and still not allowed to do ANYTHING. No driving for two weeks (like that is going to happen!) and no lifting over five pounds, no twisting and no lifting my arms over my head. I think this might be a good thing, but it is still too soon to really know, as I haven’t yet had the energy to put it to the test. Jim leaves town Sunday for three days and I’ll be fending for myself, too. Actually, he’s coming to Castle Rock, but they work 12-14 hours a day, so I don’t think you will hear from him. He loves his job, but they work his tail down to a nubbin. If I could, I would try to come too, but I cannot travel. Also, I haven’t gotten my card saying that I’ll set off security at the airport….that’s going to be a new wrinkle! They tell me that I will get a card from Medtronic. I sure would love to see you, but we still are climbing out of the debt hole that almost two years of unemployment put us into, and I don’t predict any pleasure trips for some time. I am so excited for your move, and I hope it will be a great thing for you. Phoenix is a cool place. Started packing yet?